Local parents spread awareness of daughter’s rare disorder
PADUCAH — Tuesday is Pallister-Killian Mosaic Syndrome Awareness Day. It’s recognized every Dec. 4 to bring awareness to the disorder. The city of Paducah is also recognizing the day.
Pallister-Killian mosaic syndrome, or PKS, is diagnosed in newborns. The developmental disorder is usually caused by the presence of an abnormal extra chromosome. According to the National Institutes of Health, the chromosome issue is not inherited, and it usually happens as a random event. Babies affected by it have no family history of it. Some of the many health problems the disorder causes include extreme muscle weakness, heart defects, intellectual disability, and developmental delays.
There are two families in Kentucky affected by the disorder. One of those families lives in Paducah, and they shared their story with Local 6 on Tuesday.
Dalecia and Anthony Ellison knew there was something wrong with their baby before she was born.
“They told us our life would be harder, told us I wouldn’t have time for my other kids,” Dalecia said.
That’s what doctors warned Anthony and Dalecia when they diagnosed their daughter with PKS at 18 weeks pregnant.
“They were telling us to abort her,” Dalecia said. “So, her name came because we decided that we were not going to abort her — A’Miracle.”
Each PKS case is different and ranges in severity.
“A lot of people think she sleeps all the time, but actually, you know, she has a weak muscle tone, so she’s actually just kind of resting her eyes,” Anthony said. “She’s usually awake, but eventually she’ll develop those strong muscles too.” Anthony and Dalecia said at one point A’Miracle wouldn’t move at all. But they see the progress she’s made at therapy within the last two years.
Those moments keep the Ellisons going.
“She loves her brothers and sisters,” Dalecia said. “When they come in the door laughing and talking you can tell she’s excited. Her eyes will get really big. We have our ways of knowing when she gets excited.”
She’s making miracles every day.
“Her eyes tell us when she’s happy,” Dalecia said.
PKSkids.net says there are under 700 cases diagnosed worldwide, but doctors at Children’s Hospital in Philadelphia say, because it is underdiagnosed, there could be more than 1,000 cases in the United States alone. That’s why promoting research and raising awareness about PKS is so important.
To see and listen to A’Miracle’s journey from birth, click here.